24 May 2023

Southampton Children’s Hospital looks after baby with Permanent Neonatal Diabetes

Sarah Allen, an Account Manager at Logic Contract Services, and her partner, Ryan Salmon, Owner of Logic Services, discovered their baby Lilly-May’s blood sugar was too high. She was taken into the Neonatal Intensive Care Unit at Southampton Children’s Hospital to be looked after. Later, through tests, they discovered that Lilly-May had Permanent Neonatal Diabetes. Sarah shares her story:

Lilly-May had Permanent Neonatal Diabetes

“Lilly-May was born at Frimley Park Hospital on 10 March 2012. She was under 5 pounds in weight so some additional tests had to be undertaken. One of these tests were glucose readings. A little while later after the results of the glucose readings came back, the doctors advised us that they believed she may be diabetic due to the inconsistent glucose readings that were revealed. We were provided with some basic training on taking sugar readings and discharged home on 12 March. They informed us Southampton Hospital would call us every day for the readings.

The readings were going up and up, and within a few days, the reader simply stated ‘hi’ which represented sugar readings over 30. Normal sugars should be between 4-8. This worried us. We were advised to attend an appointment at Southampton Hospital to see a diabetic specialist on Friday 16 March.

After the appointment with Nikki Davis, the Diabetic Specialist at Southampton Hospital, Lilly-May was immediately admitted to the Neonatal Intensive Care Unit, where they looked after her for around 10 days. During that time, they ran lots of tests, they were thorough, and they started giving her Insulin initially to reduce her sugar levels for better control while further tests took place. One of the tests they ran was a genetic test which was sent to Exeter University from Southampton Hospital.

Once the medical practitioners got sugars under the best control they could, Lilly-May was transferred back to Frimley Park, where she stayed for a couple of days before being discharged home. We continued to have weekly appointments with Nikki at Southampton Hospital as initial check-ups. Nikki was a god send, she even gave us her personal mobile number, which was going above and beyond, we could call her any time if we needed to, and she would also call us regularly.

Six weeks later, we visited Southampton Hospital for an appointment for Lilly-May to be fitted with an insulin pump, but once there, we were provided with the results of the genetic test. These results revealed that Lilly-May had Permanent Neonatal Diabetes which is an extremely rare condition but fortunately meant that she could be treated via oral medication (Glibenclamide) rather than insulin-based medication, where a transition from these different medications took place.

Following on from this, we had weekly visits to Southampton Hospital, until they were comfortable Lilly-May’s care could be transferred back over to Frimley Park.

The care Lilly-May received while under Southampton Hospital’s care was amazing, second to none. In fact, from the first phone call made to us when Lilly-May was originally discharged from Frimley Park Hospital, to the care she received while at Southampton Hospital, to all of the follow up appointments and calls up until Lilly-May was transferred back under Frimley Park Hospital’s care, the whole team were outstanding, and we will always be grateful to the hospital and the staff for this!

Logic Contract Services have chosen Southampton Hospitals Charity as their Charity of the Year for 2023. The Charity was put forward by 2 staff, including Sarah, who had had personal experiences with University Hospital Southampton. To read the other, Luke and Abbie’s story, see our Baby Lila recovers from Viral Meningitis blog post.

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